The Crohnicals of Amurai

Oh my, it has been a mighty long time since my last post. Countless months!! What can I say? The demands of life got the better of me.

Firstly, before I begin my next post, I would just like to say a huge thank you to every single person who read my first post. I am so blown away with the amount of support, love, prayers, words of comfort and enjoyment I received from the responses left by many kind souls in the countless comments, emails, texts and even phone calls!!

This has proven to me that I’m headed in the right direction of sharing my journey with the world so that one day it can help others too. I would also like to add an important note: These blogs are not just for people who have a medical condition. It is for everyone and anyone! Whether you are curious, bored, wish to learn more for the sake of a loved one or are seeking some sort of inspiration for life in general. I hope you can find what you’re looking for amongst these words that I write on the upcoming pages. I encourage you to ask questions!!

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As you could probably deduce from the title, I’m about to go back to the very start of my journey, where it all began. I wanted to talk a little about what Crohn’s Disease is and try to explain it as best as I can. If you have any questions at the end, please feel free to ask!

Whenever I meet new people and the topic of my Crohn’s somehow manages to come into the conversation, I am always hit with: ‘So… what is Crohn’s Disease?’ And then my face turns sour. You see, I don’t like answering this question simply because I just never know what the right answer is or how much detail is enough or too much and till this day, I still don’t!

According to my booklet guide given to me by Crohn’s and Colitis UK: Crohn’s disease is a condition that causes inflammation of the digestive system (gastrointestinal tract/gut). Inflammation is the body’s reaction to any cuts or irritation and it can cause redness, swelling and pain.

Fun fact! Crohn’s Disease got it’s name from doctor in New York ‘Burrill Crohn’ who reported a large number of cases in 1932.

Crohn’s Disease is one of the two main forms of IBD (Inflammatory Bowel Disease) and the other form is Ulcerative Colitis. It’s important for me to establish one key thing about this condition: it is often described as a ‘chronic illness’ which basically means that is ongoing and lifelong. On the bright side, as much as there will be periods where you may experience flare ups (when symptoms are active) there will also be periods of remission (when your symptoms have reached a calm). Currently, there is no known cure as such for Crohn’s BUT there is plenty of treatment (medication and surgeries) which can help manage the symptoms and give a period of relief.

What causes Crohn’s?

Now that’s a good question! Although there has been a lot of research carried out on this, the definite cause is still yet to be discovered. Over the past few years researchers have found evidence which has led them to believe that it is caused by a combination of factors:

• The genes a person has inherited
• An abnormal reaction of the immune system (this is the body’s protection system against harmful substances) to certain bacteria in the intestine (which is why Crohn’s Disease is an ‘autoimmune disease’- it is potentially your own body attacking it’s own cells!)
• Probably triggered by something in the environment (Viruses, bacteria, diet, smoking and stress)

However, I must mention once more, these are NOT definite causes for this condition.

How does Crohn’s affect the gut?

Well… when we eat yummy food like.. let’s say.. cake! Our munched up cake goes down the oesophagus and into the stomach where gastric juices break it down further. Don’t worry, the walls of your stomach is layered with plenty of mucus to protect it from the acid. Eventually, your stomach produces a milky looking semi-fluid substance called ‘chyme’ which has a porridge-like consistency. (Sorry! I hope I didn’t just put you off that bowl of Quaker Oats!) The partly digested food then travels through the small intestine where the useful part of your meal, commonly known by the adults as ‘nutrients’, is absorbed due to the food being broken down further here. All nutrients are absorbed by the bloodstream and the remainder of the ‘chyme’ is turned into waste product. This then travels down to the large intestine where the liquid is absorbed further and left over waste forms solid faeces (stools) and this is passed out of the body via bowel movement in the rectum.

This is what a healthy digestive system sounds like. But in the case that the person has Crohn’s disease, their disease can affect any part of the entire process that I just described to you. If there is some irritation in the small intestine, inflammation or presence of bacteria, then the movement of chyme increases. Consequently, this results in extremely watery stools, as the body cannot handle such a rapid process at such a fast rate, it ends up missing a step or two or three. Although this washes out harmful germs and irritants that may have been in your food, it also causes the great loss of all essential nutrients. (Yep. This is why I’m so short; NOT because I’m too stubborn to grow.)

For me, it changes from time to time. One day I find that I can digest food without any trouble other days I’m kneeling over the table, holding my stomach because of the pain. It does depend on how bad your symptoms are that day as well as what food you are eating because sometimes food can often be a trigger and can cause your symptoms to become over stimulated.

My Crohn’s is in my large bowel, a few areas in my small bowel, my rectum and where my two bowels intersect. From a scientific perspective, it affects my: Small intestine, Duodenum, Ileum, Rectum, Colon and Jejunum (the Duodenum, Jejunum and Ileum make up the small intestine.)

What are the symptoms of Crohn’s Disease?

The most typical symptoms of Crohn’s Disease usually include:

• Abdominal Pain (appendix area, constant pain)
• ‘Tummy Rumbles’ (loud and excessive. Only occurs if your intestinal muscles are having to work extra hard to keep things in order so don’t skip meals! Also know as, ‘Borborygmi’.
• Loss of appetite
• Nausea
• Vomiting
• Lump in the abdomen (in the painful part of your abdomen, consists of coils of small intestine)
• Raised temperatures
• Heartburn
• Weight Loss
• Tiredness and fatigue
• Mouth ulcers
• Anaemia
• Fistulas (Collection of pus)
• Slowed down in growth and development (in children)
• Undernutrition
• Dyspepsia (discomfort after meals)
• Bloated stomach (first thing in the morning, your abdomen feels enormous)
• Diarrhoea ( Loose watery stools) may contain blood and pus/mucus)

Does Crohn’s affect your other bodily functions?

Well, as you can probably guess, since a person with Crohn’s is losing a vast amount of important nutrients during a flare up, this would inevitably lead to one of the biggest effects that Crohn’s Disease has upon people and that is Chronic Fatigue. This one right here, is a huge problem, especially for me. On my bad days, it doesn’t take much to tire me out but I do my best to push through and overcome the urge to just drop, tuck and curl… up in my bed.

There are other parts of the body that can be affected by Crohn’s, such as your Joints. The inflammation usually affects large joints of the: arms (including elbows and wrists) and the legs (including knees and ankles). Some people can even develop arthritis, due to their Crohn’s but the likelihood of this occurring is one in three people.

Crohn’s can often affect your Skin. During flare ups, painful, red swellings appear on the legs but eventually fade leaving a bruise mark behind which I assure you does heal overtime.

A large majority of people with Crohn’s have weaker bones, this is due to the lack of calcium absorption from their meals.

Another common complication induced by Crohn’s is Anaemia. This is caused by poor absorption of iron from food or ongoing blood loss in stools. So if you’re someone with Crohn’s I urge you to keep on top of your vitamin D and Iron levels! The moment these drop everything goes downhill!

How do you diagnose Crohn’s Disease?

• Blood and Stool tests- These simple tests
• Endoscopy/ Colonoscopy
• MRI & CT Scans

How did I get diagnosed with Crohn’s?

This is something which is quite difficult for me to talk about, it is one of the major reasons why it has taken me such an extensive amount of time to write about it. I guess you could say that, while writing these posts, I’m having to dig deep and recall my painful past. I suppose I have never actually taken the time to sit down and fully accept and resolve everything I’ve endured; something I’m trying my best to work on and amend.

Writing has been helping me overcome the feelings I’ve buried within but still carry around with me. On some days I feel like I plunged myself back into depression by trying to relive certain moments that I’d much rather forget. It takes me a while to pull myself out, like even right now, I’m writing this and I’m literally struggling to fight back my tears and maintain my composure. Is it considered weakness to feel sorrow when remembering your pain and suffering, praying in your heart that you don’t ever have to feel that again? Brace yourselves, dear readers, for another tear-jerking piece.

Bismillah (In the Name of God.) My diagnosis of Crohn’s was rather unusual. It all started during the summer of 2014. I had just completed my first whole month of fasting during Ramadan, the 10th Islamic month in which many Muslims must fast. I was struggling to walk, sit and lie down as a result of the feeling of immense pressure building up around my rectum. I obviously ignored it for weeks, thinking I probably hurt myself without realising. One night, in August, the pain was especially unbearable. I don’t remember it very well, except that I was on the floor, crying because of the pain. My parents made the decision to take me to A&E at my local hospital. It was practically midnight when my dad took me. The doctor couldn’t do much so she just gave standard anti-biotics to treat a general infection.

The problem I was having didn’t go, nor did it ease so my parents took me back to A&E at least 2-3 times that week. Each time I was sent back home. “Try this medicine” “Come back in this many days if things remain unchanged.” Eventually I was referred to a different hospital, further away from home as the one I had been going to did not have the department I needed. I was then told, “The surgeon at the new hospital has asked to see you at 11am on Saturday.” But when I was reviewed, he couldn’t see what was wrong with me. He sent me back home with an Epsom salt cream and instructed me to return the following day, same time, so he could decide what to do next.

The cream caused my condition to escalate rapidly overnight. When I went to see the surgeon again he rushed me into theatre in a massive panic, stating it was an emergency and to prep me straight away. Meanwhile I had no idea what was going on, I just wanted to get it over and done with so I could go back to bed.

Having your first surgery is a different experience depending upon person to person. You could probably already guess that I was excited like the weirdo I am. I was over the moon because I knew that finally I’d be put out of my misery and have some relief. If only I knew what was waiting for me…

Looking back, I’m so proud of my parents for being so strong and brave, I can’t imagine the agony their hearts must have had to endure that morning, the pain they must have felt having to let me go with strange people they’ve never met before to cut me open and find out what was happening with me. They must’ve been more scared than me! I’m grateful they were never alone. Back then, I was only ever worried about how scared I was, that I forgot they were and are too. (I say ‘are’ because this nightmare still isn’t over.) I think it’s important to have these reflections.

I came out into recovery after 3-4 long hours, oh no not for me, for the Surgeons! I was asleep! When I woke up, I was so happy! I kept thanking everyone who came to my bedside. After a while, I was taken to my own room in a ward and told I’d have to stay in for a couple of days. Later that day, when I saw the surgeon I promised I’d buy him a box of chocolates and that he was my hero because for the first time in a whole month, I wasn’t in pain.. that was until I rolled over onto my back and then realised what he had done. I looked down at my wrists and saw pink bands, which I know now signify an open wound. Nothing could have prepared me for what he told me next. He said with tears in his eyes, “No. No, please. I’m so sorry I sent you home. I will never do that again. How can you thank me? I’m not the hero, you are. I drained 2 litres of pus out of you today, if that had entered your blood stream, that would have caused sepsis and you wouldn’t be here right now. I’m so sorry I sent you home.” I almost cried then because I’ve never seen a surgeon that emotional before. I told him it’s okay and that what matters is that he pretty much saved me and that I am here!The next couple of months were hard. I had to manage an open wound in the most awkward place, by taking salt baths twice a day and having the wound constantly packed and unpacked with gauze. It was very unpleasant and I don’t think I would have ever have gotten through that if it wasn’t for my parents who had to take care of everything for me together whilst we had house renovations going on! They’re the real hero here I think. (Disclaimer: This is not a paid promotion.)

How did I feel when I got diagnosed with Crohn’s?

Whilst I was kept in after the surgery, I had to have an emergency MRI scan to run some tests. I also had to have another drainage because I had a reoccurrence of what I now know to be Perianal Disease. To be honest, when I was first told that I have Crohn’s I didn’t feel sad at all, in fact, I remember feeling a huge weight being lifted off of my shoulders and feeling relief. This may sound like a huge shock but at that moment, the reason I reacted like that was because I believed that “since they know what’s wrong with me, they must also know how to treat me.” I suppose you could say that this was my way of being positive.

I had to start new treatment that day; the dreaded Liquid Diet. Now that is certainly a story I will tell another day!

I wish I could comfort you with the relieving two words “The end” that you ache to read after any sort of gut wrenching story, don’t worry, it is the end of this blog post but this was in fact just the beginning of my journey.

Before we part ways for another few months again, I just wanted to reflect upon something with you: Close your eyes… Imagine that you’ve got a glass of water in your hand, it’s okay to hold for a minute but to hold it for an hour? That would give you an arm ache! Then to have to hold it for a whole day? That would make your arm go numb! The fact remains, that the weight of the glass hasn’t changed but the longer you have to hold it, the heavier it starts to feel in your grasp. Our stresses and struggles in life are a lot like the water in the glass. The longer we hold onto them or have to carry them, the heavier they start to feel. Sometimes it’s okay to set the glass down and pass it on to someone else who is more adept at handling extreme stress. For me, I chose Allāh (God). He hasn’t let me down yet and I know he never will.

Until next time dear reader,

Amurai